Back in January/February I received an email invitation to an event sponsored by SuperSibs! (the organization that makes a point to include Triston on this journey and remind him he is special too). It was titled Quiet Heroes. The title alone intrigued me. I opened up to see it was a luncheon at a hotel for moms of children battling cancer. Well, to be honest after I read WHO it was FOR I pushed it out of my mind. I could not imagine myself attending such an event. Me? In a room full of other moms whose cancer battles exceeded mine in both length of time and understanding. I can't explain it. It is just that feeling of being a newbie at all of this and deciding whether I am ready to open up to others about it, especially those that have been at it for awhile. You get what I mean? But something told me not to delete the message. So it sat in my inbox.
Well, about a month or more later Areum asked me if I got the invitation (which at this point I had received a email and paper version). I let her know I had and she asked what I thought about it. I shared with her the tug I felt when I read the title. Quiet Hero. Is that what I am? And I realized it merely took some computerized text to help me see that I am indeed that, everyday. I need to be this for Grayson everyday. I am the one (of course hubby , too) completing the endless list of this and that FOR him. I am the one in the background fighting and doing for what he can't do or decide on his own. I am the quiet one, the forgotten one. And THAT is what SuperSibs! wanted me to see. THAT is what Areum helped me see in full that day, just by asking me a simple question-"what do you think about it?"
NOW, don't get ahead of yourself audience! This conversation did not seal the deal for my attendance to the event. No way. But, she did get me thinking. She knew she did, too. She asked that if she were to set up a Lutheran General table of moms in attendance and she attend as well, would I be interested. That didn't take much at all to ponder. I told her yes. I would like that. I believed I was ready for something like this. It had been almost 9 mos without any attempt on my part to connect w any other cancer families. I was not ready. I liked keeping what I understood, lived day in and day out and most importantly, believed inside my 4 walls. I did not want anything to taint that, endanger the hope and BELIEFS I have for Grayson's survival and courage. I have been comfortable with how I have accepted and battled on day by day. The groove we were in as a family and with clinic was acceptable and workable, our " new normal", and any interruption scared me, especially when we continue to hear how great he is doing. Get me?
But I told myself as I left clinic that day-if I can come to that realization in one conversation and FINALLY think of ME and how I have been affected by cancer than it would not be fair to myself or those around me to NOT do something with that knowledge. In March I registered for Quiet Heroes. And Areum let me know that I could also bring a guest. I was free but my guest had a $50 fee. Choosing my guest was easy.Not only did I know I would NEED the support during such an event but she and I needed each other at this time-the event was being held over Mother's day weekend. I hated that it was both sad and joyous events that led me to choose the perfect guest. But it was a no brainer. Remember Maria? I wrote of her mother's death back in March, the irony that her sister's brilliant team of drs that battled thru her Lymphoma (another blood cancer) are Grayson's drs, and the fact that she is a new mommy herself. Well, what better a place to be during such an emotionally difficult weekend. I envisioned it to be hard weekend for me, and more so for her. Her first mother's day, without her mom, and the rawness of that wound being poked at w a firey stick w each holiday. This way we could be there for each other to tackle a buffet of emotions.
Well, let me tell you -IT WAS WONDERFUL!! To be there not only w someone I love, my Mariella, but w a support team member like Areum was unforgettable. 2011 Mother's Day weekend goes down in history for me for so many reasons:
1. I opened up to my FIRST cancer event revolving around our own journey
2. I shared tears and laughter w so many beautiful women
3. I saw into the "other side" of what our cancer life will/may entail(
4. I saw the GOODNESS in people's hearts, strangers and organizations from all over-there was a mani/pedi booth, massage booth, hotel staff waiting on us hand n foot w champagne and food, and people who when they looked at me it felt like they saw into me. There was this silent understanding or glances that said to me " you are amazing for what you do, I get it bc I have been there or what kind of pedestal can I put you on bc you are unbelievable". I didn't feel like "oh, there's that mom of that boy who has cancer!"
5. I gained was forced to reflect upon what we have been through. To know that in 7+ mos time we made it to Maintenance. Moms I met that day had recently entered Maintenance after a year n half -2yrs. Their beautiful, strong children were battling cancer alongside other conditions that only complicate things. In the big picture we have been lucky. I have prayed for them and their journeys and what lies ahead for us.
Not only did I get to experience the above statements but I also enjoyed the presence of a wonderful speaker. His name was Jordan Sonnenblick. A down to earth fella who more than once commented on how HE felt intimated to be in a room w such empowering, strong, and dedicated women. That was quite the compliment. He began his discussion by explaining how his book DRUMS, GIRLS & DANGEROUS PIE came about. He is an English professor. When one of his junior high/high school students had a sibling that was diagnosed with leukemia he was disturbed to discover that he could not locate any appropriate reading material to help her through it all. Something beyond the factual definition type books. Something that tapped into what SHE may go thru as a sibling. So while he remained by her side (and the family) and listened to them open up he came up the idea to write the book from a sibling/family perspective. A peek into how cancer effects the entire family.
All I could think was-what a perfect tie into SuperSibs! bc that is what THEY DO! (this event was obviously well thought out!) The book interested me. And when I approached the author's signing table I caught a glimpse of his other books. But one title caught my eye. AFTER EVER AFTER. It did not indicate it was sequel to DRUMS but if this man wrote the way he spoke I was in. I purchased both books. Again, I didn't still quite know what each book was all about but when Jordan ( I can call him that bc well, his books are like he was in our heads!) asked me who he could make the books out to my responses popped out w out hesitation. He made DRUMS out to Triston and AFTER out to Grayson.
About a week or so after the luncheon G and I ended up in the hospital again. I brought DRUMS w me. I read it in less than a day. I could not put it down ( and I really mean that! After each dr-ish interruption I picked it right back up. I didn't care if G was spending the day doing TV and Ipad sutff. It as me time and I needed it. And bc I was so into the book I really did forget a few times that I was actually in the hospital. Here I was reading a book about a boy who is beginning his life in the hospital and I was in the hospital next to mine). It was so easy to read, the mind of a junior high student. And you don't have to have cancer in your life to love this book. It is one of those breeze thru quicklies bc you just have to know how Steven is going to tackle the next hurdle. How Jeffrey is handling treatment and how the parents are coping w it all. It had me chuckling bitty laughs to myself (and you know me! I barely laugh aloud at comedies). It had me smiling. Nervous. And sobbing. Truly sobbing. Part of that was what the book spoon fed me and the other part was- I WAS REALLY DUE for a good cry. Well past the expiration date.
There were too many connections to the heart and our situation. I truly believe I was meant to read this book right then and there. It was therapeutic.
Steven is the 8th grader big brother. Jeffrey is his 5 yr old bro who gets sick. And this book is the Alper family's journey through initial diagnosis.
The book is written in first-person. Steven begins the book reflecting on the past 10 mos. On the very first page he says, "How did I get here? How could my life have possibly changed so much in only ten months?" As I read that line I realized Caden was 10 mos old now. Grayson was 10 mos into treatment. Huh? yup, I was meant to read this book today. The ties went on and on throughout the book. The bond between these two brothers was the melt your heart kind. Jeffrey ADORED his big bro. He was a king in his eyes. That is my G to his T. And Jeffrey was diagnosed w exactly what G has-ALL.
And I ask myself that question all too often-When did this become my life?
What scared and calmed me at the same time? The closeness and mirrored thoughts I shared. The ideas of how moms vs dads handle these types of circumstances.
Statements like:
- "It looks like this is going to be what life is like for awhile"
- "My husband isn't really taking it well, yet"
- "We said we'd be back together soon and that everything would be fine. And at that moment everyone in the family was united toward the common goal of getting Jeffrey well".
What terrified me?
Quotes like:
- "Dad, they didn't just put tubes in. They stabbed him in the chest. They STABBED HIM!"
- "I couldn't believe my parents were just now noticing me, and that I might be upset about my brohter's situation. I'm fine. I think."
- "And I was angry. Mindlessly, relentlessly angry. Word got out about my 'tragic situation' and I was like mini-celebrity. Everyone talked of how strong and brave I was. How "lucky" Jeffrey was to have a brother like me. Why didn't they try being 'lucky' like Jeffrey for a few months?"
- "And I wanted to scream at every teacher as why they are making me do this stupid homework when my brother white blood cell count is low? Who cares about the list of presidents when Jeffrey has another spinal tap on Friday. Who cares about mulitplication binomials when my brother's gums bleed every time he tries to brush his teeth!"
- "I wanted to punch every kid that told me they 'understood' my pain. Nobody understood my pain. Maybe if I had gone to each of their houses, whacking random family members w a nail-studded two-by-four, they would have begun to have some basic comprehension."
- "And my parents-they were trying...but GOD!"
- "Meanwhile, Jeffrey went bald. He lost his beautiful golden hair. One day there was just nothing left to fall out. He never said anything to me about it along w the swelling in his face from all the steroids. He was looking horrible."
- "I will feel guilty forever...Jeffrey was driving me so nuts w his need for my attention that I was often relieved when he went to the hospital. I mean, I needed time off from him so I could catch up on schoolwork , but how hideous is that? I wished for my own baby brother to be hospitalized so I wouldn't have to play some one-side Chutes and Ladders games."
- " I was hanging in there. But the wierdness of acting 'normal' when nothing was really normal was exhausting."
- "I can't change any of it! But I can work on the things I CAN change."
- "The amazing thing was how comfortable Jeffrey was there. I mean, it seemed like a very nice place, and I was glad so many people cared about him, but I couldn't imagine feeling THAT at home in a cancer ward."
- "That day I looked at her with a new appreciation. This woman had spent nearly half her time this year at the hospital with her son, prayin gover him, watching over him, comforting him, handling all of this overwhelming cancer stuff. And suddenly, as she reached out and squeezed my arm, I realized without any shadow of a doubt that she would do the same for me."
Of course G was on my mind throughout the book (isn't he always?) but it was Triston that absorbed the foreground. Is this what he thinks right now? In the future? Will he resent his brother? Will he hate us for the life we are forced to live right now? We really are trying our best, T. The Triston element of this book (especially when it was in the big bro's perspective) shook me. Much of the sobbing was from these fears I have. And if you have been following for a while you know that I often discuss the impact of cancer on Triston and how that will play out or does from month to month. As a mom you don't just worry about the sick one. The sick one may occupy most of your thoughts throughout the day but there is ALWAYS time to think of my Eggroll n Rice. But it still hurt to read of another family suffering, thinking and wondering. Such pain. NO family should bear it. And I will never understand why some families are called to bear it more than once.
But not to get all sappy on you, please know that the book is great! It is in my top 5. And it is silly, funny, and most of all brave. I dont want to spoil too much for you if you are looking for a quickie read.
So of course I was eager to start AFTER EVER AFTER. It was written just as vibrantly. I will not spoil that one for you but I want to share the back of the book w you:
"Jeffrey isn't a boy with cancer anymore. Hes's a teen in remission. Even though the cancer should be far behind him, Jeffrey worries that it will return. He has normal stuff to worry about too-friends, parents, girls, school. NOrmally he'd ask his older brother, Steven, for advice. But trusty, responsible Steven is finally rebelling and has taken off to Africa to join a drumming circle. Meanwhile, Jeffrey's best friend, Tad, is hatching some kind of secret, crazy plan involoving eighth grade graduation. And Lindsey Abraham, a way hot girl who is new to the school, thinks Jeffrey's cute-which totally freaks him out.Theres's alot about life that cancer has prepared Jeffrey for, but there's also a lot that's brand new. Now is the time for him to stop surviving, stop worrying, and start living again."
I mean, just look at this cover. The cover of each book tells a story already.When I first looked at the cover of DRUMS it made me think of loneliness and a love for something. What that was I wasnt sure yet. AFTER clearly made me think of triumph and freedom. And this was all before I even cracked 'em open.
And how perfect that without my knowing it before reading-each book was dedicated to my perfect boy and his own special path on this journey. I will never forget meeting Jordan. I will never forget my first step into the "outside cancer world". And I will never forget how empowered I felt leaving that luncheon.
Here is to my boys.
To Triston-May he find his own personal T-like rhythm to the DRUM beat.
To Grayson-May he live his happily AFTER EVER AFTER and know his fan club is never far behind.
And to Caden-May he never cross paths w DANGEROUS PIE! And if he does-I am sure his bros will bail him out!
p.s Audience-If you want to know what DANGEROUS PIE is....READ the book! You will not regret it!
Thank you Sara Lee, for the easy-make train cake!
Angry Birds Cake for Triston! Thank you, Uncle Tommy!
We had a slingshot and all!
The Birthday Boy! Our tradition since Triston's first -frosting noses!
Grayson and his train cake. It was daddy's idea to carve out the frieght cars and fill em up. We then filled them up w each boys' fav. Triston-gummie candies, Grayson-chocolate for Choco, and Caden-cheerios and M&Ms.
I bought these at the dollar spot at Target. Filled em up with train whistles, Thomas stickers, bag of microwave popcorn and mini paintbrush art kits. I had intended for the kids to have another special treat. Empty Ice cream cones filled with circus peanuts (remember that candy?!) and animal crackers. How cute that would have been to see them walking around a handy travel snack.
Balloons for the Caden-his fav!
As you can see, the bounce house we purchased (CHEAP on amazon and at least we knew where it had been) was a success!! Could you have imagined us sanitizing some rental? This way it is ours forever and since the "party" we have had it out 4 other times bc it is that easy to set up n take down).
I also had face painting and carnival game stations planned.
Angry Birds Cake for Triston! Thank you, Uncle Tommy!
We had a slingshot and all!
The Birthday Boy! Our tradition since Triston's first -frosting noses!
Grayson and his train cake. It was daddy's idea to carve out the frieght cars and fill em up. We then filled them up w each boys' fav. Triston-gummie candies, Grayson-chocolate for Choco, and Caden-cheerios and M&Ms.
I bought these at the dollar spot at Target. Filled em up with train whistles, Thomas stickers, bag of microwave popcorn and mini paintbrush art kits. I had intended for the kids to have another special treat. Empty Ice cream cones filled with circus peanuts (remember that candy?!) and animal crackers. How cute that would have been to see them walking around a handy travel snack.
Balloons for the Caden-his fav!
As you can see, the bounce house we purchased (CHEAP on amazon and at least we knew where it had been) was a success!! Could you have imagined us sanitizing some rental? This way it is ours forever and since the "party" we have had it out 4 other times bc it is that easy to set up n take down).
I also had face painting and carnival game stations planned.
